Flutterby reminds you that every moment mattersthrough an experience you'll never forget.

When someone is dying, it’s hard to know how to be.What to feel. What to say. I found my way with Flutterby.

No one knows how to prevent or cure dementia and Alzheimer’s. And few people know how to be with someone who has the disease which eventually takes their life. I sure didn’t when my mother told me my father had the disease. There just isn’t a manual.

Unlike most diseases that are treatable, hope is not an option on the table. It moves at its own pace, in its own way and the only hope is to come to terms with the inevitable outcome. And to figure out how to be with this person as they are dying.

As the disease progressed and my father became less like the person I knew, I wondered how much time we had left for us to be together.

Every six weeks, every month, then every week, he was slipping in a way that only some medical person could predict. There was no real conversation between two adults. Just me trying to prod or pull him out of wherever he was.

What if I draw you? I asked him as he sat across from me in his lift chair. Yes, he nodded. Every other Wednesday--then every week--I visited him with my drawing pad and dog. I wrote down things he said. Drawing gave us a way to connect--sometimes without words.

The artwork and written snapshots evolved into a body of work that is visual art, poetry and performance art. I call the work Flutterby--the word my father remembered during one of my visits that I used as a child to say "butterfly."

He looked forward to these visits. In this last year of his life when his mind was not clear, he was still with me. This time together pulled me into him in a deep and intense way. It has helped me deal with his loss.

Others who have seen and heard Flutterby say it helped them know how to be with someone who is dying in a meaningful way. That it opened up their mind and heart about how to share time with a loved one near the end of life. It helped them not feel alone. And to see it’s possible to still be close with this person they are losing.

Caretakers and medical professionals say that it gave them a deeper understanding of what families go through. And how they too can connect with patients and support families.

Whether you are a caregiver, support other caregivers, are in the medical profession, work with families and patients or are in an ancillary field, Flutterby can help. Here are some of the ways.

"It was a privilege to experience this. A gift. Your presence on that stagewas exceptional."

"It was profoundly moving. It was as if someone was
speaking to me."

"Your work has powerful
resonance for me. ‘Has’ because I keep thinking about it. You did a number on me,
but only in a good way."

"Your presentation was not only very emotional but extremely artistic. It took awhile before we had the strength to
even stand up."

"What you did and how you did it was truly powerful. I have to say it got down deep with me. It was an honor to be there.
Thank you for doing it."

"I found the event even more moving than I expected, especially seeing and hearing you on the stage. You used your creativity to invent a way to communicate with your father and with an audience onmany levels at once."

"Your words and drawings were so moving and meaningful and not only spoke so eloquently of your journey, but articulated all the love and loss of our own experiences.Thank you for that."

"A truly amazing exhibit and performance. That was a special evening that we will cherish. You are truly an amazing artist.
Thank you!"

"Simply superb."

"I loved your work, both the images and the writing. I admire your delivery; honest, clear, not at all indulgent or exploitive of your emotion or manipulative
of the audience."

"It was transformational. So poignant. And also funny. We were unprepared for what happened. It showed such
tenderness and sensitivity. I want to see it again."

"You created something that resonates with everyone. You tapped into one of those
experiences everyone will have. We’ve all been there, but you gave voice to it."

"You didn’t shy away from your voice--a beautiful, engaging, easy voice. You put everyone beside you in that room. It spoke to me."

"You so generously made those last months with your Dad come alive and opened up our minds and hearts to the possibility of sharing those end times with our own loved ones."

"An evocative, delicate approach to a universal experience we have."

"Your way of ‘being’ with your father will resonate with me."

"You held my heart in your hand."

"I found both the images and text touched me in my most tender places. Feelings of grief
and peace arose."

"Amazing art and performance. I was moved to tears."

"Your artwork and narrativetouched me deeply."

"Extremely emotional.
Truly beautiful."

"Your work brings back the wonderful memories of being with someone you love. Waiting, watching, listening—
saying goodbye."

"I’m speechless."

"Beautiful. Deeply touching."

"Thank you for your touching performance and gentle drawings."

"A beautiful way to approach those moments in life."

"I relived my mother’s last days in your words and drawings. Both are excellent, moving me to tears.
How wonderful that you can express it—your feelings—
this way.Thank you!"

"I found myself wishing I had
seen this before--when my mother
had dementia. It would have opened up ways for me to
connect with her."

"I didn't even think it was possible for any positive thoughts or feelings to come from anyone's experience with Alzheimer's disease. Yet you've inspired us to consider a more loving perspective."

"You created a simple and powerful performance. It was one of the best theatrical pieces I've seen for a very long time. I could tell you put your heart in it and that most people can relate to the unmistakable message the performance conveyed."